I woke up this morning in my own bed. A pileated woodpecker, rapping on the side of our log cabin, drew me from a restful slumber that had spanned nearly 12 hours. We arrived home late last night, having driven all the way from Boston, closing out a steady stream of travel that began in February, culminating in two, action-packed law school graduations within the past two weeks.
William graduated from Columbia Law, and his cousin, Lincoln Plews, followed suit at Harvard! Each graduation was chock full of receptions with professors, late night dinners with friends and family, regalia, crowds, and city traffic– all traversed in my new Jazzy power wheelchair.
In between the Harvard receptions and ceremonies, we seized the opportunity to meet with Carol Hamilton, VP of Development, and Fernando Vieira, M.D., CEO, at ALS-TDI (Therapy Development Institute), in Watertown, Massachusetts.
For more than a year now we have been hoping to find a time to visit ALS-TDI, to explore opportunities for a partnership between ALS-TDI and the Hummingbird Fund. Carol and Fernando gave us two hours of their time, and we discovered that we shared an urgency and a commitment to alter the course of ALS. Stay tuned for a number of joint ventures that will advance the missions of both entities.
ALS-TDI is the world’s foremost discovery lab devoted solely to ALS. Like most ALS nonprofit organizations, ALS-TDI began on a shoestring budget by people affected personally by ALS. In the case of TDI, Stephen Heywood was diagnosed with ALS at age 29. After finding no treatment options, his brother, Jamie Heywood, realized that a gap existed in the preclinical development of therapies for ALS. In 1999, Jamie founded the ALS Therapy Development Foundation, now ALS TDI, in the basement of his family’s Newton home in an effort to bridge this gap and bring effective treatments to people with ALS as quickly as possible.
With preclinical, clinical, and translational research all happening under one roof, TDI can rapidly pursue the best ideas for slowing, stopping, and ending ALS. Read more about their history and accomplishments here.
Since February, in addition to the two graduations, we have traveled to Boston, Texas, California, Hawaii, Atlanta, Chapel Hill, and Washington D.C. I’ll write more about these adventures in future blog posts. For now I’ll close with a report from our nation’s capital.
But first a word about life in a wheelchair.
Sitting in a wheelchair, let’s just say, I am closer to nature. Shrubs are no longer knee-high, they brush my shoulders.. Dogs approach and sniff as if I were a hydrant. It hasn’t happened yet, but I’m just waiting for one of them to lift a leg. Rolling along busy city streets, I have ample access to urban aromas like piled trash, and subway grates. And, the most surprising new vista is being at eye-level with the top of everyone’s inseam.
Most pedestrians are chivalrous when they see me. People hold doors, move chairs in crowded restaurants, or clear a path for me to pass. Taxi drivers are hit or miss with an offer to help me fasten a seatbelt, load the chair, or get into and out of their front seat. Peggy’s favorite has to be accompanying me across a wide New York City boulevard, at night, just as the theaters let out. Jazzy goes 3.1 MPH at top speed, on the flat, which is never fast enough as we watch the walk sign countdown like an NBA-playoff shot clock.
It’s always an adventure traveling with Mr. ALS.
We returned to D.C. this year with hundreds of other IAmALS advocates to lobby for legislative action. The gathering began with the planting of 6000 flags, each with the name of someone diagnosed in the US with ALS. Last year we spent the first day planting row upon row upon row of small blue flags. This year, since I was physically unable to kneel down on the ground, we decided to spend the day on the Hill, meeting with Senators Kaine, Warner, Gillibrand, and Braun.
In addition to Peggy, William, and myself, our team included Alyson Ball from the Hummingbird board, our son-in-law Hal Edmonson, and our IAmALS friend and advocate Tim Tobin. We met ahead of time to prepare our strategy and presentations, and further honed our message with guidance from the professionals at IAmALS.
Our top priorities for the senators:
- Secure their support for level funding (through appropriations) for the Act4ALS
- Secure their support for increased funding for ALS research at the Dept of Defense (CDRP)
- Strengthen support for the Promising Pathways legislation to insure accelerated approval of new ALS treatments
- Reinforce the importance of being part of the ALS Caucus
As we shared personal ALS stories, we could feel that the urgency for Congressional support became real to the young legislative aides. We had also done our homework. We were ready to talk about any of the legislative details. We left the Hill energized with new and authentic relationships in these four offices.
After a celebratory dinner at The Monocle, seated at John F. Kennedy’s favorite table, we just happened to bump into Senator Mark Warner of Virginia. He was enjoying a glass of wine on the patio. Emboldened by our day, I introduced myself and used the chance meeting to provide a brief overview of our meeting with his legislative aid, Jonah Kim. Senator Warner expressed his support for neurodegenerative conditions and thanked us for our advocacy. (I realize at this writing that we could be better at asking for selfies with dignitaries.)
The next morning, we gathered on the Mall to share reflections, and calls to action. Standing in front of a sea of blue flags, we took turns speaking to the assembled crowd, many of whom have become close friends through activism with IAmALS. Last year I recognized a handful of people. This year I knew almost everyone.
When it was my turn to speak, I approached the microphone full of emotion. This would be my first time to approach a lectern in a wheelchair. This would be my first experience speaking publicly with the slow, arduous speech of someone with ALS. This would be the first time trying to contain the exaggerated feelings that surface involuntarily for many of us with ALS. Most importantly, I was following people whom I’ve come to know, whose stories now felt deeply personal to me.
In my remarks, I hoped to reflect on what I had learned in this past year living with ALS.
First and foremost, living with ALS requires a team. The complexity of my daily life intensifies as the weeks pass, and I require more support at every turn. I’d seen the importance of a well-functioning team in my work with the families who care for children with medical complexity and disability. The selfless dedication of caregivers, whether in ALS or childhood disability, is always humbling and inspirational.
Secondly, I’ve repeatedly witnessed new abilities emerge as others fall away. The child with spina bifida who invents locomotion to keep up with her peers. The teenager with cerebral palsy who uses a motorized wheelchair joins the high school dance team. And now my friends with ALS who write novels, and create elaborate GIS maps with eye-gaze technology, or learn how to recraft legislation to support ALS drug discovery. The tragedy of ALS is real, and the human spirit is indomitable. Both can be true simultaneously, especially when nourished in a community of hope.
In my closing I offered two calls and one reflection:
A caution to those on Capitol Hill: Don’t mess with ALS advocates! We are a force to reckon with. Our motivations and inspiration run deep and true. We are in this for the long haul.
An invitation to those on Capitol Hill: Join us. Be a part of our team. We can accomplish great things together. We can help you be the best you can be.
To the people gathered: I offer gratitude for the invitation and opportunity to join a dynamic team of advocates– to get in the game and discover new capacities, even as physical function declines.
We are home now. And while there is always more work to be done, it can happen right here. Peggy is working full-time after all. For me and for now, regular rest and contemplation are welcome companions, and central to a full life.